Saturday, February 2, 2013

#104: I'm not a Statistic

In David Servan-Schreiber's book Anti-Cancer, he recounts the story of a man diagnosed with mesothelioma, Stephen Jay Gould. In assessing the survival curve for his disease that compared the number of deceased with the number of months lived, Gould was struck by the small but significant tail end of the curve. There, although there were few, he observed that there were some people surviving the disease for months, even longer! According to Servan-Schreiber, "Gould didn't see any reason why he too could not be found at the end of that long tail, and he breathed a sigh relief." Gould lived twenty years after that diagnosis, and died of another disease.


This is probably the strongest case against patients reading statistics or other studies on cancer. Both statistics and studies attempt to generalize very unique experiences to create an overall understanding of a particular disease or phenomenon. But those statistics don't tell your story. They don't predict what will happen to you, and they can't help you understand what your experience will be. They are simply one tool available to practitioners to determine the course of your treatment and to help make clinical decisions.

Statistics are not predictors of your story.

I didn't even need to think about that after my diagnosis. It had never occurred to me that I would not survive. In fact, when I made the mistake of reading some literature on my disease, primary mediastinal b-cell lymphoma (PMBCL), I was shocked to learn that some people didn't survive. Perhaps that speaks to the nature of my disease. But it also speaks to the belief and hope that I think lives in all of us, the conviction that your story can be the exception.

I have been planning a trip to Istanbul, Turkey. Needless to say, people's reactions are cautious, and often cite women being 'taken', harassed, uncomfortable, or a recent bombing in the nearby capital, and the danger in Turkey sharing a border with Syria. When I hear these stories, I'm reminded of Gould's story. Who's to say I can't be the exception? As my most well-travelled friend put it, "Unfortunately, all those stories are true, but ultimately there are millions of people (tourists and locals) where nothing happens but a good time."

She also told me that "The experience of travel, especially to places that are so foreign are so worth the extra precaution you may need to put in place."

That's right, I booked my trip yesterday. And just like it was with cancer - my story won't be foretold by a statistic!

2 comments:

  1. Great post!

    It puts me in mind of an old Elijah Wood movie called "The Bumblebee Flies Anyway." I can't remember if the film was actually any good but the title came from the idea that bumblebees are not actually built for flight, but they don't know that, so they just do it anyway. a group of doctors try this concept out on Elijah's character by not telling him he has a potentially fatal illness.

    While I'm not advocating people be kept in the dark or anything, I totally agree with you that you can't rely on statistics to predict your own fate.

    ReplyDelete
    Replies
    1. Hello metamorphicity! Thanks for the comment, and I think you're right to be careful not to suggest people be in the dark. If anything, statistics, knowledge and my own research were very helpful in being an informed and questioning patient. But... there's a negative side too! You just have to be careful not to 'go there'. Thanks again,
      Stephanie

      Delete